The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a “death warrant”. This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this paradigm is parental awareness that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba.
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In the Western world there is a long-standing tradition by which parents are given ultimate authority to make important decisions for their children.1 2 And one of those decisions is to authorise the removal of life-sustaining treatment when said treatment would be futile or would merely prolong dying. Contrary to the opinions of a number of healthcare providers, some parents believe that the decision to withdraw life-sustaining measures from a terminally ill child, while difficult, is not an unbearable burden. Moreover, research has shown that many parents consider that making life-and-death decisions on behalf of their offspring is a legitimate parental responsibility.2 In contrast to this, some parents of terminally ill children have indicated that being asked to authorise removal of life-sustaining measures is akin to being asked to sign a “death warrant” or “pull the plug”.3 This predicament leaves families not only with the grief of losing a loved one, but also with the guilt of being seen as having given up on their child. In such instances, physicians may practise a form of benevolent paternalism (the fabled “slow code”), wait for “nature to take its course” or continue life support measures, even when medical staff recognise the futility of maintaining intensive care.2 4 5 To avoid this situation, some investigators have proposed that instead of seeking consent for a plan to discontinue life support, healthcare providers work towards seeking familial acceptance.6
As mentioned, Western cultures have traditionally assigned parents responsibility and authority over their offspring. In the USA and Europe, this concept is enshrined in laws where in one form or another it is indicated that parents are legally responsible for their children when they are minors.2 7 Regarding healthcare, parental responsibilities for minor children also include taking on the role of “healthcare surrogate”—that is, parents hold the authority to make medical decisions on behalf of their offspring. Concerning the issue of withdrawing life support, parents are entitled to and expected to exercise that decision-making role.2 But what happens in those instances when parents, faced with life-ending decisions, are overcome by feelings of ambivalence, anxiety or guilt? Do they have many alternatives? Regrettably, in most American states and European nations, they do not. A parent paralysed by sorrow can ask for advice from the healthcare team, clergy or relatives. But realistically, members of the latter two groups are unlikely to take on the role of surrogate when an end-of-life decision is on the line.2 And unfortunately, the laws of most American states and European nations prevent members of the healthcare team from taking on the role of surrogate, even if being kept on life support violates some of the patient’s rights.8–11
Several lines of reasoning have been presented to prohibit members of medical teams from acting as healthcare surrogate for their patients. For example, some believe that the fiduciary duty of healthcare professionals is to keep patients alive as long as possible.1 Others consider that, in the age of cost-containment, some might give up on a patient too rapidly.12 Finally, there are those who argue that to avoid appearances of self-interest, individuals should not take on the dual role of healthcare provider and healthcare surrogate.2 While the aforementioned concepts have theoretical merit, they lack practical significance in those instances when as a consequence of grief, literacy or cultural idiosyncrasies parents become emotionally incapacitated.
To address this dilemma one can envisage a paradigm by which parents of terminally ill children entrust the role of healthcare surrogate to the treating physician, bearing in mind that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. A necessary assumption for the model to work is an understanding by all parties that futile care needs to stop; the only moral issue remaining is for the order to be written. To accomplish this process, hospitals would generate a document akin to a “Do not resuscitate” (DNR) form, whereby parents bequeath their role of healthcare surrogate to the treating physician. Pairing this approach with anticipatory guidance, in-hospital support (bereaved parent networks, clergy, social services) and follow-up care would provide families with bereavement support and dispel myths associated with the process of dying.6 13–15
The aforementioned concept is an appealing option for the situations described above as it conforms to the four basic principles of medical ethics.16 Autonomy or self-determination has traditionally been defined as the ability and right to be able to choose for oneself.17 Recognising that there are circumstances when individuals may not be able to choose, Wehmeyer has proposed alternative definitions of the concept of self-determination.18 One such definition suggests that a severely impaired person’s autonomy continues to be upheld as long the individual is treated with the deference to which all people are entitled (the famed “golden rule”). Allowing a treating physician to act in a patient’s best interest, regardless of outcome, is in line with the patient’s right to be treated with dignity and respect. Beneficence and non-maleficence are the principles that promote avoidance of unnecessary suffering and other forms of harm.19 Allowing a treating physician to carry on the duties of healthcare surrogate for a terminally ill child whose parents are emotionally paralysed by end-of-life decisions would avoid treatments and procedures that merely prolong dying, and thus be consistent with the principles of beneficence and non-maleficence.19 Finally, the principle of justice or more specifically distributive justice, refers to how benefits and burdens are shared by all members of a society. In some instances, this means balancing the individual patient’s needs with the expense to society in staff and monetary cost.16 Allowing a treating physician to end intensive care for a child whose parents feel incapable of making an objective end-of-life decision is in accordance with the principle of distributive justice.
The laws of most American states and some European nations prevent members of healthcare teams from acting as healthcare surrogate for terminally ill individuals.8 In selected European countries, those where end-of-life dialogues have taken place for some time, physicians are, however, allowed to take on a more paternalistic role and make decisions on behalf of imperilled children.5 20–23 For example, a recent survey revealed that physicians in French paediatric intensive care units have a commanding role in the decision to forgo life-sustaining measures for terminally ill patients.21 In Switzerland, a formal paternalistic model is used to discontinue futile intensive care for neonates.23 In Norway and Sweden guidelines indicate that physicians, not parents, should make final life-and-death decisions on behalf of very sick children.20 22 Finally, in the 1997 case of a child in a persistent vegetative state, the Manitoba Court of Appeal held that the legal authority to decide between treatment and non-treatment rested with the child’s physicians, setting the legal precedence that, in the Canadian province of Manitoba, physicians may act as a child’s healthcare surrogate.19
McHaffie et al8 have indicated that when faced with the responsibility of allowing withdrawal of life-sustaining measures “… parents ought to be given the opportunity to take on this responsibility … [but should they decline to do so] they should not be obliged to make the ultimate decision themselves” (p 108). As suggested here, in those situations, parents and healthcare providers ought to have a straightforward legal recourse.
Competing interests: None.
Ethics approval: This work was deemed exempt from formal evaluation by Duke University Medical Center’s Office of Human Subject Protections.